Wednesday, May 23, 2012

Still Here, but Hopefully Not For Long

We are still at the hospital.  At 5:00 this morning, the nurse pulled up more residual formula than they wanted to see, so they slowed down her progress.  Fortunately, all the other feeds left the appropriate amount of residuals, so Lily is making progress.  Early tonight, they gave her a bolus (where her feed is given quickly) of 45 ml.  She held that one down.  Now she's getting a 90 ml bolus--and sucking the heck out of her thumb!  (This could be a sign that she's quite hungry!)  I'm anxious to see how she'll do.  Still, the doctors want to get Lily to the point where she's taking the amount she takes at home before they let her go home.  I'm fine with that.  

Despite being in the hospital, today has been a lovely day.  Around 7:00 tonight, I was holding Lily, and we were playing.  She kept batting me with her right hand which not only has an inactive IV in it, but also has a board holding her hand straight.  I made noises as if she was hitting me--"ooh, ooh"--, and she'd just smile the biggest smile.  Then I'd pretend like I was going to get her, and she'd cringe as if she was trying to keep away.  I also got a sweet laugh out of her as I tickled her feet.  She stood for a few minutes and danced while standing.  This little girl is feeling so much better!

It's so amazing to see.  I'm pleasantly baffled.  Since we've been in this step-down room, her heart rate, SATs, and breathes per minute have been wonderful.  She's not required any oxygen, even when sleeping, which is not how it's been at home.  It's quite miraculous! 

So I want to say that God is good.  But it almost doesn't sound fair to say that because what if something bad had happened to Lily?  I would like to believe that you would still hear me say that even if something bad had happened.  How could I not?  We have been given (so far) three amazing years with Lily.  In our sorrow, we have learned what it means to be held by God.  We have received the kindness of strangers and those we know.  We have held our family together when statistics show that we could be broken.  And the list goes on.  I acknowledge this for the better and for the worse.  Yes, God is good.  So I struggle with this because it's not just about the answered prayers.  Because I think a lot of people want to give God credit and call him good when the prayers are answered.  But sometimes, they're not, and how easy it would be to say that God failed when the prayers aren't answered.  But I think if you take a keen look at the little things in between, and you count those blessings, and you let God take over your life when things aren't going well, that's where you find His goodness.  It's there.  Always has been, always will be.


  1. Love this! So glad she's feeling better and I totally get the dichotomy of God is good and unanswered prayers. My first thought when I see someone who is pregnant now is "oh, I hope things are okay." Then I wonder if "okay" means that I'm hoping to deny them the blessings that come from knowing and loving one of these precious children. My prayers are with you for many more years of Lily.

  2. Just said a prayer for Lily to receive her needed nourishment, keep it down, and continue to thrive. Thank you, Jill, for the beautiful testimony to God's sovereignty and goodness, even in situations that may--at the outset--seem "bad." It is my hope and my prayer that she will indeed feel better on the flip side of this surgery than she did before. Then we'll "see" it was truly God's protective hand allowing this problem to be exposed and corrected. He is SO good and loves this little girl with a perfect tenderness and mercy we cannot even imagine, as He sees the "big picture" that our human eyes do not. What an awesome God!♥Momma Ray

  3. I see love and I believe love, your blog is interesting, thank you for sharing!

  4. You are a brave mom, Lily is an angel, I like her!